AMA Journal of Ethics® May 2017 Volume 19, Number 5: 411-513 Ethics in Mental Health and Oncology From the Editor Unexplored Ethical Issues at the Intersection of Mental Health and Oncology 413 Weisheng Renee Mao Ethics Cases Influence of Psychiatric Symptoms on Decisional Capacity in Treatment Refusal 416 Commentary by Joshua M. Baruth and Maria I. Lapid Do Pediatric Patients Have a Right to Know? 426 Commentary by Philip M. Rosoff How Should Clinicians Respond to Transference Reactions with Cancer Patients? 436 Commentary by Fatima Noorani and Allen R. Dyer Ethical Management of Patients with Cancer and Mental Illness 444 Case and Commentary by Laurel J. Lyckholm and Arwa K. Aburizik Podcast The Importance of Spiritual Care Referrals for Cancer Patients: An Interview with Dr. Tarris Rosell In the Literature How Situational Diagnosis Helps Disentangle Ethical and Psychological Features of Complex Cases 454 Jerry Joseph Ignatius and Walter Baile State of the Art and Science Assessing Psychological Toxicity and Patient-Reported Distress as the Sixth Vital Sign in Cancer Care and Clinical Trials 460 Thomas W. LeBlanc and Arif H. Kamal AMA Journal of Ethics, May 2017 411 When and Why Should Mental Health Professionals Offer Traditional Psychodynamic Therapy to Cancer Patients? 467 David P. Yuppa and Fremonta Meyer Medicine and Society Decreasing Smoking but Increasing Stigma? Anti-tobacco Campaigns, Public Health, and Cancer Care 475 Kristen E. Riley, Michael R. Ulrich, Heidi A. Hamann, and Jamie S. Ostroff Prioritizing Mental Health Research in Cancer Patients and Survivors 486 Monica R. Martinez and Amirala Pasha Should Clinicians Intervene If They Suspect That a Caregiver Whose Child Has Cancer Is at Risk of Psychological Harm? 493 Amy E. Caruso Brown Images of Healing and Learning From Silence into Language: Questioning the Power of Physician Illness Narratives 501 Amy E. Caruso Brown and Rebecca Garden They Are People First, Then Patients 508 Monica Lalanda, Eva Gracia-Peligero, and Maria Teresa Delgado-Marroquín About the Contributors 510 412 www.amajournalofethics.org AMA Journal of Ethics® May 2017, Volume 19, Number 5: 413-415 FROM THE EDITOR Unexplored Ethical Issues at the Intersection of Mental Health and Oncology Perhaps no diagnosis is as universally feared as that of cancer. It is intuitively and empirically evident that fundamental uncertainties of a cancer diagnosis, such as prognosis and morbidity, can engender significant distress and dominate a patient’s cancer experience. For instance, reported rates of depression range from 22 percent to 57 percent and from 33 percent to 50 percent for oropharyngeal and pancreatic cancers, respectively [1], which are significantly higher than the 6.7 percent 12-month prevalence of a major depressive episode among US adults [2]. In addition, there are not only psychological mechanisms at play in cancer patients’ experiences but also biological ones, with bidirectional relationships between mental and physical outcomes in oncological settings that are not entirely understood at this time but which might have significant clinical implications [3, 4]. Despite the importance of the relationship between mental health and oncology, psycho-oncology did not formally develop as a field until the mid-1970s due to stigma related to cancer and mental health issues [5]. Although stigma from both sources still exists, multiple disciplines have made contributions to both research and clinical care that seek to minimize its impact on patients’ illness experiences. Research and clinical care innovations include but are not limited to behavioral interventions to decrease cancer risk and increase early detection; management of psychological issues before, during, and after treatment; and discovery of connections between psychological and physiological domains that relate to cancer risk and survival [5]. This issue of the AMA Journal of Ethics® aims to contribute to the developing model of integrative cancer care by examining several currently unexplored sources of ethical complexity in cancer illness experiences. One ethical concern is the relative lack of distress screening and interventions in cancer research and care settings. Mónica R. Martínez and Amirala Pasha assess the landscape of contemporary cancer research and argue that more attention and funding should be devoted to mental health research. Considering that many cancer centers have added distress as the “sixth vital sign” as the psychological impact of patients’ cancer experiences and treatment have gained attention [5, 6], Thomas W. LeBlanc and Arif H. Kamal look specifically at whether clinical trials adequately incorporate assessments of distress and how this information might guide treatment decisions within routine clinical care. AMA Journal of Ethics, May 2017 413 Decision making is a focus of several other contributors to this issue. Responding to a case in which a patient with a potential mood disorder has rejected further cancer treatment, Joshua M. Baruth and Maria I. Lapid discuss a conceptual model of informed consent and decision-making capacity assessment and examine how clinicians’ conversations with family members or surrogates is key to understanding a patient’s best interests and values. A patient’s role is emphasized in Philip M. Rosoff’s commentary on a case in which parents do not wish to inform their child of likely infertility following chemotherapy or to delay his treatment for the purpose of sperm cryopreservation. Rosoff considers potential mental health consequences from the child’s exclusion from this decision and ultimately suggests what might constitute an appropriate clinical, ethical, and legal response in light of possible future harms to the patient. And Jerry Joseph Ignatius and Walter Baile discuss several factors that can obscure an ethical dilemma and consider their influence in psycho-oncological settings. Two articles consider the ethics of treatment. Focusing on psychiatric treatment for oncological patients, David P. Yuppa and Fremonta Meyer compare treatment modalities and argue that while time-limited “manualized” (e.g., behavioral) therapies are prominent in recent studies and potentially easier—emotionally and clinically—to conduct than traditional psychodynamic psychotherapy, they might not have superior efficacy depending on the treatment goals and thus might not represent a more appropriate treatment approach. Focusing on cancer treatment, Laurel J. Lyckholm and Arwa K. Aburizik argue that clinicians must give those with preexisting mental illness special attention due to their vulnerability and exercise empathy and imagination in delivering just, compassionate care. Medical decision making and treatment, however, cannot ignore the context in which care is delivered. In their commentary on a case of a young cancer patient who terminates all treatment after her psychiatrist responds professionally to her confession of a romantic attachment to him, Fatima Noorani and Allen R. Dyer discuss the ethics of maintaining boundaries and how to manage patients’ and physicians’ emotional responses and transference reactions to each other in settings in which patients might feel particularly vulnerable and in need of support. Amy E. Caruso Brown considers how to support caregivers in an article examining the ethical obligations of clinicians who have concerns about the mental health of a pediatric patient’s caretaker. Last, this issue of the AMA Journal of Ethics considers factors outside the clinical setting and how they might impact a patient’s experience of cancer. Kristen E. Riley, Michael R. Ulrich, Heidi A. Hamman, and Jamie S. Ostroff question whether stigma generated by hard-hitting anti-tobacco public health campaigns is a justifiable cost of efficacious public health benefits; they also consider how clinicians might diminish their potential roles in perpetuating stigma among patients with lung cancer. Amy E. Caruso Brown and Rebecca Garden analyze how physicians’ literary memoirs about their own cancer 414 www.amajournalofethics.org experiences help them bridge the divide between clinicians and patients and examine ethical issues that arise in clinicians’ writing about patients. Finally, in the podcast, Tarris Rosell discusses the role that religion or spirituality can play in an oncological patient’s health, particularly his or her mental health, and considers what constitutes an appropriate response to a patient’s spirituality concerns. The relationship between mental health and oncology is nuanced, and it can be approached from multiple directions—for instance, by considering the biological and psychological impact of cancer treatment on a patient’s mental health, the oncological care afforded to those with mental illness, and the ways that mental illness can affect oncological treatment and vice versa. This theme issue aims to probe issues of clinical and ethical importance, with the hope of focusing more attention and research on exciting and essential intersections of cancer and mental health care. References 1. Massie MJ. Prevalence of depression in patients with cancer. J Natl Cancer Inst Monogr. 2004;(32):57-71. 2. National Institute of Mental Health. Major depression among adults. https://www.nimh.nih.gov/health/statistics/prevalence/major-depression- among-adults.shtml. Accessed March 13, 2017. 3. Bortolato B, Hyphantis TN, Valpione S, et al. Depression in cancer: the many biobehavioral pathways driving tumor progression. Cancer Treat Rev. 2017;52:58- 70. 4. Mayr M, Schmid RM. Pancreatic cancer and depression: myth and truth. BMC Cancer. 2010;10:569. http://bmccancer.biomedcentral.com/articles/10.1186/1471-2407-10-569. Accessed March 28, 2017. 5. Holland JC. History of psycho-oncology: overcoming attitudinal and conceptual barriers. Psychosom Med. 2002;64(2):206-221. 6. Bultz BD, Carlson LE. Emotional distress: the sixth vital sign—future directions in cancer care. Psychooncology. 2006;15(2):93-95. Weisheng Renee Mao MS-3 The George Washington University School of Medicine and Health Sciences Washington, DC The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA. Copyright 2017 American Medical Association. All rights reserved. ISSN 2376-6980 AMA Journal of Ethics, May 2017 415 AMA Journal of Ethics® May 2017, Volume 19, Number 5: 416-425 ETHICS CASE Influence of Psychiatric Symptoms on Decisional Capacity in Treatment Refusal Commentary by Joshua M. Baruth, MD, PhD, and Maria I. Lapid, MD Abstract How psychiatric symptoms affect patients’ decision making in practice can inform how we think—theoretically and conceptually—about what it means for those patients to have decision-making capacity. Assessment of a patient’s decisional capacity allows those with adequate capacity to make choices regarding treatment and protects those who lack capacity from potential harm caused by impaired decision making. In analyzing a case in which a patient with stage II breast cancer refuses further treatment, we review the conceptual model of informed consent and approaches to assessing decision-making capacity that are in accordance with the American Medical Association Code of Medical Ethics as well as tools to assess decisional capacity. Case Dr. A is the oncologist for Catherine, a 55-year-old woman with newly diagnosed stage II breast cancer. When Dr. A asks about Catherine’s past medical history during her initial consultation, Catherine mentions that she has often felt so tired over the past two years that she could barely get out of bed. “It just didn’t seem worth it to wake up,” she explains. “So I’d just sleep all day because I didn’t want to do anything. It’s not like anyone would really miss me, anyway.” Dr. A asks if Catherine feels that way now, and she shrugs, “Sometimes. It comes and goes. It was bad after my husband died two years ago, but I guess I feel okay now.” Dr. A also notices in Catherine’s health record that her weight has fluctuated up to thirty pounds in both directions. When asked about this, Catherine says, “I don’t really remember why—probably different diets.” Catherine reports that she has never talked about her mood with a clinician. She adds, “Everybody used to say I was just moody.” During treatment, Catherine experiences side effects so severe that she cannot go to work and reports difficulty with activities of daily living, as she lives alone and lacks immediate family or close friends. As Dr. A evaluates her initial response to treatment, he sees that her tumor burden has actually increased slightly, and he informs Catherine that she might have to undergo more aggressive therapy. At this, Catherine shakes her head and says, “I won’t do it.” When pressed further, Catherine says, “It isn’t worth it to me. I’ve thought a lot about my life over the past weeks, and there just isn’t any reason to 416 www.amajournalofethics.org keep going, especially since my husband died.” Dr. A asks Catherine to consider people or activities she still enjoys, to which Catherine retorts, “That’s exactly what I did. I couldn’t think of any.” Dr. A then asks about her struggling to come to terms with her cancer and suffering during treatment. Catherine says sarcastically, “Well, it’s no picnic. But honestly, Dr. A, I’m okay with things ending here. I’ve lived my life, and, at this point, I’m tired of suffering. I just want to be with my husband. I miss him all the time.” Uncertain about Catherine’s mental health, particularly given her history, Dr. A consults Catherine’s primary care physician, Dr. B. Dr. B recalls, “There were times over the years when she seemed a little withdrawn, but nothing ever jumped out at me.” He confirms that her husband, who was her main social support, died two years ago and says that he has not seen her since then. “She and I had a pretty good relationship, though,” Dr. B adds. “I’m sure I can convince her to consent to further treatment. I can’t imagine having nothing to live for.” Wanting additional and more up-to-date information, Dr. A refers Catherine to a psychiatrist, Dr. C, who diagnoses Catherine with complicated grief and prescribes antidepressants. However, Catherine does not fill the prescription. When Dr. A calls to ask her about this, Catherine says, “Look, I understand what’s at stake here, and I’ve made up my mind. Please don’t make this harder for me.” She expresses understanding of the risks and benefits of refusing further treatment for her cancer. Dr. A wonders if Catherine’s grief has compromised her capacity to give an informed refusal. He also wonders just how far her current feelings are from her baseline mood, how much distress her cancer experience has caused her, and the degree to which this could be influencing her decision making. Lastly, Dr. A considers Dr. B’s offer to try to “convince” her and wonders whether further attempts at persuading her might not be respectful of her decision and values. What should Dr. A do? Commentary Determinations of medical decision-making capacity are intended to uphold patients’ rights to make their own medical decisions but at the same time protect them from their decisions when their capacity is compromised. It should be noted that capacity is attached to a particular medical decision (e.g., consent to treatment, participation in research) at a particular time [1]. A person lacking capacity for one medical decision may have capacity for other decisions [2]. Assessing capacity can be subjective and confusing for clinicians, particularly when patients refuse a recommended treatment or the treatment involves substantial risk. The presence of adequate decision-making capacity is a mandatory criterion of the informed consent process. For informed consent to be valid, three elements must be present: provision of information, voluntariness, and competence [3]. Provision of AMA Journal of Ethics, May 2017 417 information requires that a patient receive adequate information regarding the nature and purpose of a treatment or procedure as well as the risks, benefits, and alternatives of each option, including no treatment. Voluntariness requires a decision to be made voluntarily and free from coercion. Competence is a legal determination of mental capacity that includes those abilities evaluated by clinicians in assessing decisional capacity. The legal standards for evaluating capacity are generally based on patients’ ability to: (1) understand the relevant information about their condition and proposed treatment; (2) appreciate the nature of their situation, including their underlying values and the potential consequences of their choice; (3) reason about the potential risks and benefits of their choices; and (4) express their choice [4, 5]. This assessment process is in accordance with the American Medical Association Code of Medical Ethics’ “Opinions on Consent, Communication & Decision Making” [6]. In this article, we discuss the case in the context of this guidance and the conceptual model for informed consent and approaches to assessing decision-making capacity. Influence of Psychiatric History and Current Diagnosis As we see in this vignette, Catherine is experiencing complicated grief following the death of her husband two years prior as well as a recent diagnosis of stage II breast cancer. Complicated grief is an older term for grief in which significant incapacitation persists for over six months following a loss [7]. In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, it is now included in a proposed psychiatric syndrome called persistent complex bereavement disorder (PCBD), although the emphasis remains on distress or functional impairment so severe that is outside of sociocultural norms of bereavement [8]. Catherine presents a clinical picture consistent with depressive symptomatology occurring initially in the context of grief, since her husband died almost two years prior to her cancer diagnosis. After her husband’s death she experienced fatigue, inability to get out of bed, feeling it was not worthwhile to wake up, excessive sleepiness, lack of motivation, severe weight fluctuations, and moodiness. Although Catherine reports these symptoms are now intermittent, they clearly are in excess of normal grief given their duration (two years) and severity. Her depressive symptoms have worsened during the progression of her cancer, to the extent that she now expresses increasing feelings of worthlessness, finding no reason to live, anhedonia, and desire for death suggestive of passive suicidality. It is important in this case to recognize the presence of major depression, the serious risk of suicide, and the need to treat appropriately. Depression can impair medical decision making, and Catherine’s severe depression, significant functional impairment, and possible passive suicidality put her at risk of making treatment decisions that she would not otherwise make if she were not depressed. One important ethical consideration, then, is whether it is ever justifiable to consider a patient’s refusal of treatment to be indicative of lack of decisional capacity 418 www.amajournalofethics.org based on a patient’s symptoms of mental illness. What is the relationship between psychiatric symptoms and medical decision-making capacity, and is it ever appropriate to take into consideration a patient’s psychiatric diagnosis when determining capacity? And what if the patient is refusing treatment? Historically, it has been a common perception that people with mental illness have a reduced ability to provide informed consent [9]. Severe depression can manifest as impairment of information processing and reasoning that can significantly affect decision making [10]. Compromised ability for decision- making capacity has also been associated with disorders like dementia and delirium [11], intellectual disability [12, 13], psychosis [14, 15], and bipolar disorder [16-18]. Additionally, reduced decision-making capacity has been associated with patients admitted involuntarily or patients refusing treatment [15]. Not surprisingly, there has been controversy regarding the appropriateness of including people with mental illness in medical research [19, 20]. Yet, studies have shown that decision-making capacity is preserved in the majority of psychiatric patients [15], including those with mild to moderate depression [21-23]. Diagnostic categories alone (i.e., Alzheimer’s, depression, schizophrenia) do not equate with presence or absence of decision-making capacity [1]. For example, in schizophrenia, capacity is correlated only modestly with psychotic symptoms but more strongly with cognitive dysfunction [24]. Therefore, based on the bioethical literature, it would be inappropriate to let a prior or current psychiatric diagnosis determine Catherine’s medical decision-making capacity. Accordingly, her capacity should be determined in the context of her current decision and underlying values. Determining that she has some understanding and ability to communicate her decision may be straightforward. In the vignette, Catherine says: “Look, I understand what’s at stake here, and I’ve made up my mind.” However, it may be a bit more difficult to adequately assess her ability to reason and appreciate her underlying values. Is Catherine able to use reason in the context of a psychiatric diagnosis for complicated grief? Is she able to identify her underlying values while experiencing significant distress related to her husband’s death and her own cancer diagnosis? One instrument to assist clinicians in evaluating decisional capacity is the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), a semistructured interview that requires the clinician to provide patients relevant information about the medical condition; the proposed treatment options; and the risks, benefits, and alternatives of each treatment option. After provision of information, the clinician is further guided by a set of questions to test patients’ understanding and appreciation of the information presented to them, their reasoning ability in going through the different treatment options and making a selection, and their ability to communicate a choice [25]. The MacCAT-T has been used to measure decisional capacity in people who are severely depressed [26], so use of this instrument in Catherine’s case would provide valuable AMA Journal of Ethics, May 2017 419 information regarding her unique situation and decision. Importantly, it has been shown that physicians often fail to correctly recognize incapacity, sometimes as much as 58 percent of the time [2], which further highlights the importance of using formal assessments like the MacCAT-T as well as consulting relatives and other members of the health care team. Determination of Best Interest and Capacity Another important ethical question highlighted by this vignette is who is best positioned to assess decisional capacity and the patient’s best interest. A psychiatrist is most commonly consulted to assess decisional capacity, but any licensed physician can make the determination [27]. It is important for physicians to consider that their determination is not just clinical, but ethical [28, 29], and should not be based solely on objective measures [29]. The belief system and morals of physicians should not unjustly influence their decisions about capacity. It has been proposed that the influence of these factors can potentially be reduced by physicians’ recognizing their own biases, seeking second and contrasting opinions, and reporting the results of different conclusions [29]. Discussions with family and the multidisciplinary health care team are key in determining patient values that inform medical decision making. For example, including physicians previously involved in the patient’s care and the hospital ethics service can be important in understanding a patient’s belief system and decision-making history, which information can support conclusions regarding capacity if prior medical decisions are in agreement with the decision being made currently. Not only can information from family and other health care professionals be used to support conclusions when determining capacity, but it can be useful to a surrogate or proxy decision maker when a patient is deemed to lack decisional capacity. Through substituted judgment based on knowledge of the patient’s wishes or preferences, a surrogate decision maker upholds the ethical principle of respect for autonomy [30]. If the patient’s wishes are unknown, or when necessary to prevent suffering, the surrogate makes decisions based on what he or she thinks is in the best interest of the patient [30]. For example, a surrogate may rely on knowledge of a patient’s spiritual commitment and its role in past medical decisions in judging what is in the best interest of the patient. Influencing a Patient’s Decision Another important ethical consideration for this vignette is whether it is ever appropriate for a physician to attempt to influence the patient’s decision. One of the essential elements of informed consent is a lack of coercion, assuming the patient has capacity to make a decision independently. In cases in which the patient’s decision may not appear to some to be in his or her best interest, despite seeming to have adequate decisional capacity, there are approaches physicians can use to assist the patient in an unbiased way without disrespecting his or her autonomy. First, if the patient does not recognize the importance of a capacity assessment, the physician should encourage the patient to 420 www.amajournalofethics.org